Diagnosis: Transverse Myelitis
Florida, United States
It was the summer of 1998; I was 11 years old. I remember having felt back pain for a few days but not thinking much of it, as any child would. A few days later my family and I were invited to a birthday party at Al Lopez Park in Tampa. When we arrived, I remember running over to the playground but deciding to sit off to the side for a while. Something didn’t feel right in my body. It wasn’t too long until I started feeling tingling and numbness on my left arm. I quickly found my dad to tell him, but we both brushed it off and I went back to the playground. However, the tingling in my left arm began spreading to my right arm and felt like ants crawling all over me. Uncomfortable and a bit worried, I ran to my dad and informed him once more. I remember him telling me to rest, and if I continued feeling worse, to let him know. So I headed over to the playground one last time and at this point the tingling, numbness, and ant-crawling sensation had covered my whole upper body. Now really frightened, I informed my dad one last time, and we decided to head to the hospital. Unfortunately, at that time my body was already losing strength and balance. I could barely walk to the car. By the time we arrived at the hospital, I could no longer move.
After a few days in the intensive care unit (ICU), the attending doctor diagnosed me with transverse myelitis and mentioned that I would never walk again. I was completely devastated. But with prayer, faith, and support from my family, a few weeks after my diagnosis I began moving the fingers on my left arm. That was the beginning of my recovery. With physical and occupational therapy, I began regaining sensation in my body and building my strength once more. The recovery process was long (years) and, many times, frustrating. But I am now able to use my story to show others that miracles still happen.
Now, moving forward to 2020, I confronted a new diagnosis. With similar symptoms – back pain, tingling, numbness, and loss of strength – I ended up back in the hospital. After extensive testing and screenings, I was informed that I have CIDP (chronic inflammatory demyelinating polyneuropathy). This is another rare neuroimmune disorder very similar to Guillain-Barré Syndrome. Thankfully, my recovery time was much quicker this time around – just a few weeks.
Overall, the hardest part of living with a rare neuroimmune disorder is having to learn and adapt to doing things differently, as well as the stigma that comes with a disability. When I was younger, I had to relearn how to do absolutely everything, with less strength and coordination than the average person. It was frustrating and discouraging as a young boy and teenager to feel as though I couldn’t do all things like my peers. But now that I am older, the most difficult part is feeling as though others think I cannot do as much or do things as well as others because of my condition. However, I feel as though I have proven to many that I can do anything I put my mind to. That is why my hope is that I can use my story and experience to inspire others battling their own difficult diagnosis, to not give up in their fight. I want to remind them that they are still capable and still valuable. I believe my purpose is to uplift others in their journeys.
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